got LP results & still confused

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zanadu
Regular Member


Date Joined Aug 2006
Total Posts : 20
   Posted 9/11/2006 6:17 PM (GMT -6)   
Hi everyone,
 
Just got off the phone with the dr. and had a crying jag. All of you have had tons more time in limboland than I so I feel pretty silly for being so upset. But I am nonetheless. He said no bacteria or viral inf. High on the inflammatory and did have oligoclonal bands. He said he was uncertain of my condition still. That I am in a gray area. Not sure if it's TM or MS. I did have 2 areas on my c-spine mid Aug. and now he says to wait til mid Feb for a repeat c-spine and also do a brain. At the time of the LP he told me he thought this would give him enough info to diagnose, really thinking it was TM. Since this is my first episode. He told me he would put me on high doses of steroids to help. What I don't understand is why isn't he still going to give me steroids just to help either way. My numbness has moved
from feet to legs to the band around my trunk and is now stopped in hands and left arm. All of it's been worse on left side. It really is hard for me to do my job and it affects daily living. I have broken so many dishes. Started crying because I can't tie my own shoes or
put a bra on!! Well, now I'm cracking myself up cause I'm totally having a pity party tongue I was just so hoping he would give me something to help. I am sooo tired all the time as I know you all know very well. He then said 6 months would help him better see any changes and
to call immediately if anything new arised. He also said he very aggresive once he felt comfortable dx MS and believed in starting treatments asap. As always thanks for any input and for listening to me vent;) I'm so glad I found you guys!!
 
 
Tiffany

Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 9/11/2006 7:49 PM (GMT -6)   
Hi Tiffany,

I don't think anyone would blame you for being upset and feeling the need to vent! Having to wait longer is very frustrating but it sounds like your doctor just wants to be sure. I'm sorry you are having so much trouble right now. Is your doctor aware of all the problems you are having with your daily activities? Sometimes you really need to impress on the docs how bad things really are so they will attempt to treat the symptoms while waiting for the final dx. Keep us updated, and i hope you feel better soon!

Kimber
 
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Paris Girl
Regular Member


Date Joined Feb 2006
Total Posts : 33
   Posted 9/11/2006 9:14 PM (GMT -6)   
Tiffany,

I know how difficult it is not knowing what's wrong. I've been dealing with the same ??????? It's hard. You're in my thoughts and prayers.


Blessings,
Paris Girl

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 9/11/2006 9:32 PM (GMT -6)   

Hey Tiffany

Hang in there and don't let u'rself think u have no place being upset. U have EVERY right to be! U'r world and body are changed and u'r going thru an aweful lot! I'm so sorry u'r living in limbo now. I'm with u and Paris Girl and many others and it's very hard to not know what's causing so much trouble in u'r once good and normal life. It does sound like u have a good doc who's being thorough and trying to make the RIGHT dx and that's great. I hope whatever ur dx turns out to be, that u'll get it soon and will be able to obtain the right treatment. Until then, hang on and know u can come here as much as u need and want and find lots of support. Please keep updating us and let us know how things progress. Best wishes to u!

rhonda

 


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 9/12/2006 6:07 AM (GMT -6)   

Steroids, particularly in high doses and over a long time, can cause lots of severe and lasting side effects,

so he probably doesn't want to use them as frequently as you'd like. They're rarely prescribed for numbness, or tingling, or the sensory stuff.  If they were, I'd have been on them for 23 years, now, as I have little sensation from mid-torso to toes, the whole torso and both legs, and limited sensation in my left hand.  Yet I learned to use my arms and hands and get about living, with it.

If indeed you can't dress yourself, you do need to be clear with the doctor about the extent of the numbness.  Is it just that you are learning how to deal with that sensation and so drop your laces, or bra strap -- or you really literally cannot do it, even though you concentrate on holding it in your hands and watching yourself go through the motions?  If you literally can't to it, he needs to know that, for certain.

I hope you understand this: I am NOT trying to be cranky.  It's just that..if indeed you do have MS, you'll need to learn how to live with all sorts of strange sensations, loss of sensations being high on that list; weakness in limbs, difficulty walking, maybe bowel and bladder problems, a host of other symptoms -- and while there are treatments for some of them, some of them you need to just learn to cope with, on a daily basis.

I think your doctor has done the right thing. TM can dissolve, over time, and the one serious episode is all that you'll experience. Or it could develop into MS.  It sounds like he set up the February appointment, hoping you'd understand that --

if things get dramatically worse before then, like new symptoms develop, that you're on the phone to him, reporting that, and perhaps demanding an earlier appointment, and if you do get another attack (which could be disguised and overlooked if your on steroids) you'll be that much closer to a diagnosis of MS.

I hope you've told him about your "crying jags", which could be something called "emotional lability", another possible symptom of MS? Lots of folks have been given a medicine which has helped even out your emotions; it may also help with the fatigue.  You might call the doctor and ask about that.

I hope you feel better soon.

 

 

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


zanadu
Regular Member


Date Joined Aug 2006
Total Posts : 20
   Posted 9/12/2006 8:13 AM (GMT -6)   
Thank you all for the kind words. I was just having a moment yesterday, much better dealing with everything today. You hold it all in so much and then you break....straw that broke the camel's back kinda thing:) Uppity, I don't take you as cranky at all. I have a ton of respect and admiration for anyone who fights and learns to cope with anything like this. Thank you. I'm not able to do things like I used to and it's hard for people to see me and me to see me not be strong like I feel I used to be. I will cope and I will not give in or give up. I have an active 11 yr old and family to be as strong as possible for. I think the beginning of all this just hits like a ton of bricks and you feel like you are dreaming and it is not real. But it is. Thanks for explaining the disguise of steroids, I didn't even think of that.

You all are in my prayers as well and I will be watching to hear about all of you!!!!!
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